Appreciate The Victories

  I wanted to write last week, but was honestly just too exhausted emotionally to get anything out there. I know I am not alone. Again, I am a positive person. I just do not think anyone is getting through this year unscathed. In an effort to avoid further conversation about the barrage of information that is being pushed down our throats currently, let's go back to talking about the main point of this blog; my absurd health and the events that unfold.

  My focus today is my biggest frustration of the moment. I have mentioned it before, but this darn broken foot of mine. I am typically confined to my home due to my health. I have to nearly pack up the house just to leave for a few hours; meds, emergency gear, protective measures, etc. The current pandemic has forced me to stay in even more, which has actually proven good for my Lupus. If only all others would fall in line. Lupus is really affected by sun rays so the less time outside is reducing inflammation inside my body. I am getting cabin fever though. With my foot broken it is limiting my activities even more and that is driving me crazy.

  I went to the podiatrist two weeks ago for a follow-up hoping I would be able to begin using only the walking boot with no crutches. No dice! Everything is still in place and aligned which is normally a big concern with diabetics. That one was a relief. However, my foot is not ready yet. I was moved into a smaller boot. The first one went up to my knee. This one is mid calf. But I still needed 2 weeks continuing non-weight bearing. Then, the plan is to move on walking with the crutches as support the third week. The fourth week I will be allowed to walk in the boot without a scooter or crutches for one to two hours a day. I will see him after that week.

  I am on the third week. Although I am feeling improvement I am not ready to put my foot down too much so I am using the crutches and scooter just as I had. I have put a little more weight on it, but not much. Next week I will try walking in the boot with the crutches. I am just too afraid to push too quickly and end up spending more time recovering. Let's get'er done by taking it slow.

  My shoulder injury that occurred last fall was supposed to be a simple eight weeks of physical therapy. That turned into sixteen weeks, then twenty four weeks.....and then COVID-19 caused the facility to close so I had a home program to follow. I continued that until I had reached my final goal/milestone. All in all it ended up going from October until May. Except, the facility opened up again in June so they called me in. As terrified as I was to leave the house I thought they would see the progress I made and release me. HA. Nope. They started me back up to finish out six more weeks. At this point, however, my foot was already broken so they had to modify a lot of my exercises. Although I enjoyed the challenge, I had to let them know that until I could bear more weight on my foot I just wasn't strong enough to be so active. That length of time has challenged my patience and emotions greatly.

  With my foot slowly moving along, I am becoming more fearful of the actual length of time for healing. Not only do I need to take baby steps to start bearing weight, it will then take six to eight weeks before I can possibly get out of a boot. Once out of the boot I will need special shoes and/or inserts to support my foot. I will also have a lengthy physical therapy/rehab time. I have come to accept that. I believe in about a year I may be where most healthy people are after four to five months. A very healthy person I know had a four year recovery from a sesamoid fracture of the foot. That bone is right near the big toe embedded in tendons. My fractures are of the calcaneus and cuboid, which is the heal bone and the bone that attaches it to the last three toes. Seems to me, I am no expert, but it seems to me they are similarly difficult to heal because of their positioning. That being said, I am just a little overwhelmed with the thought of it all.

  I am an active person. Sick or not, I exercise everyday, multiple times a day. Not just because I have always been an athlete, but when I eat I must get up and move otherwise the food sits like bricks in my belly. Trust me, I would be fine with a morning workout and be done for the day. I prefer to walk around or clean or something similar for the movement after food, but right now I have to find a creative way to move after lunch and dinner to get some movement in. We recently moved into a home that sits on front of a mountain. My husband and son have spent a lot of time hiking and discovering new "Goonie adventure's" as my son calls them. I am so envious. I try to push that down because it is just the reality of the moment holding me back from joining them, but I miss it. FOMO.

  We also live in an incredibly beautiful rural area of NM. There are so many hidden gems and well sought out tourist attractions. All outside and wide open spaces so during this moment in history it is perfect. I have yet to visit my favorite lake that I hear is pretty full right now. I haven't been able to get to that area to hike around either. My parents live in the wilderness, but it has been ages since I have been to their property even though it is a mere twenty five minutes from us. There is a lot of "I wish I could"s going on here. That only makes me feel sad because that is a lot of negative and fearful thinking.

  As this blog typically is, it is helping me iron out my thoughts in a cathartic way allowing me to see what I should be appreciating. I can definitely say I am learning a lot more about my body. Because I have had to get creative with movement and exercise I am probably stronger now than before. Most of what I do is upper body work so my arms and abs are steel right now. There is a lot of total body workouts I can do on a yoga mat without putting pressure on my foot so my legs are still be activated. The movements I am learning from the online program I came across have trained muscles I rarely used before. It is also helping my shoulder because the abs, hips, and butt are the center of your body. Making them strong creates balance helping strengthen your posture muscles. That comes along with shoulder strength so....bonus ;-) My only hope is that once I can incorporate weight bearing exercises I don't lose sight of what I have created now. That is a goal I plan on focusing on as I recover.

  It being the year of shelter in place seems like the best time to be laid up with an injury. My hope is that maintaining my active lifestyle while hurt will help during the rehab phase. Since I will be going to the same facility for physical therapy as I did for my shoulder, maybe they can get knocked out together and I can worry about something else. Isn't that human nature? When all goes well, we still find something we long for. The good thing is, I know that to be true. with that in mind it helps focus your mind and heart on what you do have that is positive.

  Everyday I wake up and work to find something I am proud of and hold it close. When life is so overwhelming, focusing on small victories is the best medicine. Today has not been my favorite day, BUT I have my small victories. I got up before my alarm meaning I had good sleep last night. I woke up in a good mood. I completed my workout, enjoying it the whole time. Man it was tough though. This Caroline Jordan health coach is awesome. It is raining so this high desert is getting some good moisture. I had no control of that, but it is nice. And I was able to get out and deal with an errand or two. Let me just say, rain and crutches are not easy. Believe it or not, writing this blog today is a victory.

  It seems I have so much to chronicle, share, and inform that I often second guess every word. I truly want to help someone out there who may be struggling with similar issues. I want to keep my friends and family up-to-date. When all this first began in my early twenties, I had no where to turn for a road map on how to navigate such a complex web of diseases. I had no one to look to as a role model for keeping your head above water and managing these disease that seem to fight one another.

  I am a professional student. I love to learn and research. I rarely found anything. One thing I found solace in was learning that President John F. Kennedy likely suffered from the same rare disorder I have, APS Type II. A little snippet, they actually had him isolated for a while to give him steroid treatments so when he began to run for president he looked healthy and vital. All the while, even during his presidency, he suffered in pain daily. His back and adrenal glands really took him out. That is a small pinhole picture for you. There is not a whole lot written about it. Anyway, I needed a JFK to look to during those first few difficult years. I want to make it easier for a layman who may be ill or have a family member who is ill to find some real account information. Not just medical jargon, but real world accounts. I hope that this blog reaches someone who truly needs it. I pray that it leads them to better scientific research to gain knowledge. Science talks the talk, I walk the walk. Together we can conquer.

   It has been a few years since I last posted. I really needed some support when I first starting going through this crazy journey of multiple illnesses stacking up on one another eventually being found to have APS Type II which is a fancy name for "my immune system prefers to attack me". I could find information on each disease. I could find blogs and stories of people who had theses diseases. But I could not find someone who had faced so much all at once. I could not see a light at the end of all these scary doctor appointments and tests and hospitalizations. I felt lost and alone, and understandably scared. I started this blog because it was what I was looking to find. I knew that there must be more people going through this, yet no one was talking.
 
   A few years into writing, and being very vulnerable, I was told by someone that the information I was sharing would be better put in a journal. I got another comment or two after that as well. It started to make me feel bad. Just two or three tiny statements had this enormous affect on me. I shut down. I no longer wanted to share my story. I read non-fiction all the time. I love learning the ins and outs of anybody's stories. I thought that if I shared I would help someone else. Then these statements made me feel as if I were doing something wrong.

   I started this blog with the intention of it eventually turning into a book. From the time I was first diagnosed with Type I Diabetes I was told I needed to write a book. As things played out for the next decade, the inquiries about a book kept flowing in. I continue to get encouraged to write a book. "It will help doctors." or "someone just like you needs this right now." or "it is so incredible, it is almost unbelievable." So, here I am again at my keyboard. Whether or not I ever turn my story into a book, I do not know. What I do know is, if I can impact someone I need to act.

   Without going back detail by detail, I just want to re-introduce myself. I am a 37 year old wife and mother. I grew up in rural NM. At the age of 12 or 13 I was diagnosed with Hashimoto's Thyroiditis. That is similar to having a slow thyroid except the thyroid is actually a goiter or inflamed. My father passed away from Type I Diabetes when I was very young. At the age of 20 I was found to have the disease as well. I was in college studying psychology at the time. My goal was to help special needs individuals. That diagnosis made me take a bit of a turn and I decided to also study nursing wanting to eventually become a diabetic educator. Suddenly I began to have another problem. This time it was interstitial cystitis. A condition that prevents your bladder from maintaining its mucus layer leading to ulcers and burns inside your bladder. I began medication and started to feel better. I was told, however, that fertility was going to be an issue. Not being married and only being 21, that information went in one ear and out the other. I did have a long term boyfriend, but I am a total Type A personality so babies were not on my mind.
 
   Jokes on me. I found out I was pregnant at 22. I was warned the pregnancy was not good. I continued my studies and had a healthy baby boy nine months later. Things seemed to be stabilizing. I had good blood sugar control and my thyroid medication was on point. I no longer needed my bladder medication because the IC had gone into remission. None of this stopped me from striving to reach my goal of a career in medicine. Until one fateful day my boyfriend, now husband, found me face down in the closet at 6am. I had had a seizure. Mind you, we thought we knew all of my health issues and epilepsy was not in the mix. The seizures became more frequent and continually unexplained. After about a year, we decided to move back to our rural hometown for a slower paced life hoping that would help. Unfortunately it didn't.

   As time went on the snowball rolled.  I was sent to the Mayo Clinic twice which only gave us a clear diagnosis of epilepsy. That made it necessary for more testing in our local region. I was found to have full blown Celiac disease which lead to a diagnosis of pernicious anemia, chronic atrophic gastritis, alkaline stomach, and gastroparesis. I was sent to a rheumatologist who diagnosed Lupus, but things still didn't seem right. To me or my doctors. I was sent to an immunologist. They found an array of allergies. Then suddenly, an answer.

   I was diagnosed with Schmidt's syndrome or Auto-immune Polyendocrine Syndrome Type II. That's a fancy way of saying I have an overactive immune system that is attacking my body in multiple places. This made the myriad of diagnoses come together. But as all diseases do, they progressed. I finally agreed to go to Johns-Hopkins University. From there we were told my stomach had come to a halt and I needed a device called a gastric stimulator to survive.

  Six weeks later we were in Dallas preparing for this new chapter. I got the stimulator implanted and began gaining a little strength and weight. My weight had gotten as low as 82 lbs. We spent four years in TX so I could be close to the doctors that implanted the device. Through those four years there were hospitalizations and a few bumps in the road, most of which are documented in previous posts. We eventually made the decision to move back to NM because I was becoming overwhelmed with being the patient, not feeling like a human. We chose a place on a major freeway so access to doctors would be easier because, let's face it, I do need monitoring. I also made sure there was someone nearby that could mange my stimulator.

   The past four years have played out fairly smooth compared to my roller coaster decade and a half prior. Things have progressed as most diseases do. My stomach is no longer really responding to the stimulator. The battery will last about a year or two more if I am lucky. At that point, I will have to decide whether to replace the battery or remove the device all together. Because it has been so long (2013) since it was implanted I am worried I do not remember what it felt like to live without it. Through a lot of long, hard talks with my husband I have decided to let it die. I will hopefully be mentally strong enough to leave the device in for two to three months nonfunctional. This may give me a better idea of how much of a difference the stimulator has on me. If I decide to live without it, we can then remove it.

   To be honest, my knee-jerk reaction is to take it out. The battery pack is under my skin in a pocket above the muscles. The leads go through the muscle to connect to the stomach. The battery pack takes up the entire left lower quadrant of my abdomen. For someone who is 5'3" on a good day and hangs out around 100 lbs right now, that is a lot of space. With my diabetes I have an insulin pump which is connected to the body by an infusion, similar to IV's except it is just in the fatty tissue not any veins. It needing to be in fatty tissue limits your sight options to the abdomen, love handles, buttocks, inner thighs, or back of the arm. A continuous glucose monitor, Dexcom, is also something that needs to be stuck into fatty tissue to read blood sugars through interstitial fluid in fatty tissue. All that being said, I have very little fat so I have my Dexcom on the right lower quadrant of my abdomen. That leaves the mini love handles for my pump infusions. The Dexcom and insulin pump infusions create scar tissue. Scar tissue does not absorb insulin properly and does not allow the Dexcom to have accurate numbers. We have tried other parts of my body, but these are the only places that work. Problem is, the scar tissue is building up and I have no where else to go. If I had that left lower quadrant of my abdomen available for my diabetes management devices it would help.

   The conundrum here is blood sugar versus nutrition and weight. With the paralysis of my stomach and the multitude of other digestive issues, food is not absorbed properly. This wreaks havoc on my blood sugar. A normal stomach pumps about 16-24 times per minute acting like a blender with your food and passing it on to the small intestine. If I am lucky, mine will do that in a day. Food does not travel consistently or fluidly. Sugar is absorb through your small intestine so not knowing when the food actually will get to the small intestine causes some issues when trying to manage my blood sugars. Add that to the scar tissue I have building up causing trouble with insulin absorption and diabetes management is nearly impossible. I do what I can with diet and exercise, but a gastroparesis diet is completely opposite of a diabetic diet.

   It is recommended that people get around 25 grams of fiber per day. Fat is ok, but best through plants and nuts. And protein recommendation is about 40 grams. Every body is different, this is just general. For diabetics, if you follow this diet with very little sugar you can be smooth sailing. Now for gastroparesis it is recommended to keep fiber less than 10 grams per day. Same goes for protein. And fat should stay around 5 grams per day. WHAT?! Yeah. Think about that one for a second. One egg is roughly 6 grams of protein. One slice of bread typically has anywhere from 2-5 grams of fat. A banana has about 3 grams of fiber. Now, imagine your typical day and your typical diet. Seems nearly impossible to meet all these bench marks or limits. There you have it. What would you do?

  This has just been a brief re-introducing of my health background. Let's remember, my health does not define me. Reading this is daunting and it all sounds depressing and scary. The truth is, you're right. But I am not living in a pity party. I still have a million blessings all around. I still have the crazy mom days. I still find a way to exercise EVERYDAY because I love it. It makes me feel better. It makes me happy. And it makes me feel proud and accomplished when I have conquered something. I love to read. I like crime shows and comedy specials and sports. My son is autistic and teaches me so much. We have a crazy little 9 month old Australian Shepherd mix who makes us laugh everyday.

   In an effort to not make this post any longer I will sign off for the day. My intention is to return to writing. I would love to share with you my antics, knowledge, health, and personal growth through this journey I call life. I will leave you with this little nugget. I have become friends (in my mind) with a health and fitness coach on YouTube named Caroline Jordan. She says "Smiling is an advanced move if you feel the need to kick it up a notch". I feel the need, ladies and gentlemen.

Chance Meetings

Yesterday I went to my son's soccer game.  I have to say that watching kids as young as 3 years old try to figure out and play the game of soccer, in itself, is a joy.  He has been playing since he was 5 and he is about to turn 7.  At this age they still do not have a full field or team.  The coaches are allowed on the field to guide and direct the players.  It is total chaos with plenty of smiles, laughs, trips, and spills.  Best way to spend an hour of your life, in my opinion.  The kids joy is contagious.

Building on that, I volunteer to help out during lunch at his school once to twice a week.  It's almost like an addiction.  I used to volunteer in his head start classes as well.  I could never be a teacher.  I have so much respect for those who take responsibility for our kids for 6 to 7 hours a day.  They put in so much work, it is remarkable.  Volunteering, however, is at my own will, and I am not held "accountable" for much so the stress aspect is removed.  I get to just fully enjoy the innocence and joy of children.  Even in their little arguments or temper tantrums, you can feel their emotions.  It really keeps you grounded, and can help remind you what is really worth focusing on in life.

Although, I am supposed to keep my life as "easy" as possible, we all need something to look forward to everyday.  I look forward to sharing joys and trials with my son. 

Last night, at the soccer game, my mother in law said hello to the woman who sat down right next to me.  They seemed as if they knew each other.  My mother in law is much more outgoing and vocal than I am, so I brushed it off as her being extra friendly.  Within a few minutes, they started up a conversation.  It turns out, they knew each other because they worked together at an elementary school a few years back.  My mother in law had been there 30 plus years until last May when she retired.  This woman I had never seen so I assumed it was a short term working relationship they had.  I was right.

As the conversation went on, they got to the topic of "What are you up to now?"  My mother in law talked about her retirement and the freedom she enjoys these days.  The other woman said "my lupus began to flare up so my husband suggested I just stay at home to take care of myself.  I work a few days now at the college, but....."  That's when my mother in law gave me the look.

She and I had just been discussing the frustrations of all the medicines, appointments, tests, and maintenance I go through with all these diseases.  While waiting for these most recent neurology episodes to be figured out, it seems to make things more difficult.  I am one big, giant Jenga game on top of a high wire.  I am one symptom or one medication away from the whole thing toppling over.  I have to be so careful as to what I chose to do and what treatments I decide to use because one inevitably affects another.  I was telling her that sometimes I think that modern medicine is a cop out and we should let natural selection do its job.  BUT I want to be here for my son and I truly see the treatments as a gift.....I'm just tired of the mary-go-round.

I do not, especially with strangers (face to face), openly discuss my illnesses unless directly asked or it is a necessity.  My mother in law's look was her nudging me to speak to this woman.  I opened my mouth, "Is it just too tiring to work with your lupus?"

That began our conversation.  Turns out she was having very similar neurological problems that preceded her leaving her job.  She is old enough to be my mother because she was there watching her grandson who is on my son's team.  She talked about the years of mystery she went through with doctors not knowing what was wrong with her.  It wasn't until after her 3rd child, I believe to be about 25-30 right now, did doctors finally diagnosed her with lupus.  As the conversation went on, I realized what a mirror I was looking into.  It was almost refreshing....if nothing else, validating.

I explained to her that I have never actually met another person with lupus.  I have seen them on TV, read about them online or in magazines, heard my doctors stories of other patients, but NEVER have I met anyone with lupus before.  She was very friendly and kind.  She told me I would be in her prayers.  I was so intrigued by every word she said, yet it was this casual conversation during our kid's/ grand kid's soccer game.

I came home and told my husband all about it.  I felt so good knowing that the symptoms I have are not a mystery.  They are a mystery to us, but this other lupus patient has them and is being treated so there is hope.  I am not crazy or a hypochondriac because she talked to me and told me these things first hand before I even let on that these symptoms were bothering me.  It is a feeling I cannot describe.  A feeling of, "I knew I wasn't alone, but now I am really not alone.....not even in this town.  There is someone else who understands from the inside."  That was enough for me to walk away with some peace. 

My husband and I got into the deep talking.  I told him it was almost bittersweet meeting her.  I am glad to feel validated.  I am glad to not feel like such an outcast.  I am glad to see this woman being able to go see her grandchildren play soccer.  She got to watch her 3 children grow up to adulthood, get married, and have kids.  That's something I thought was impossible for myself.  Then, to know she has had similar symptoms and problems that have been determined and treated gives me hope.

The flip side to this all is the look in her face.  She was just as tired, frustrated, and depleted as I.  She and I were the only two wearing hoodies and shivering.  It was an evening game in New Mexico fall so even though the temperature was 65-70 degrees, the breeze was cold.  Lupus patients, especially on treatment, are very cold intolerant.  I'll spare the science behind it, but it has something to do with vasoconstriction.  She also talked about her "wasted degrees" because she can not work due to her illness.  "All the wasted time and effort and knowledge" she said.  (My husband has always told me "knowledge is priceless, a degree is never wasted") She even spoke of the misunderstanding from the outside world.  We look like normal people on the outside so we are often judged when a flare up occurs.  I could tell her emotions were so very similar to my own on the inside even though neither of us went there when talking to one another.

That fear of this constant struggle.  It haunts me.  It used to haunt me before I had any diagnoses, wondering if I would ever feel like myself again or get some relief.  Now, I have plenty of diagnoses combined with some stability in many areas, yet I still feel physically bad more days than not (4-5 out of 7 days in a week).  That look in her eye and that unspoken understanding of how hard it all is, broke my heart.  I told my husband, "I would love to see our son grow up and live to see his children grow, but I cannot imagine another 40 years of this day in and day out."

That is something I will need to mull over the next few days.  I will see her often throughout the season so maybe she will be somewhat of a role model.  Her grown kids seem very happy and love her dearly, so she did something right.  Plus, the family is so close knit.  All things to strive for in my future.  It is so hard to compartmentalize the negative aspects out of all that good.

As I laid in bed last night thinking about the days events I told myself I needed to blog about this chance meeting I had because it was so impactful.  I sat down at my computer to get this novel of a blog (as they all are) out, and I had an epiphany- there have been more chance meetings I was not so astute about.  The woman who works in the cafeteria at my son's school had a daughter with Type I Diabetes.  Unfortunately, the daughter has since passed away.  I believe she would be in her early 40s by now.  October is particularly hard for the mother because her daughter passed on Halloween.  Nonetheless, yesterday she had us decorating up a storm in the cafeteria for the kids to enjoy this month.

School has been in session for about 6 weeks and I have been volunteering for at least a month now.  Throughout this month we have shared small talk that gradually leads into personal short stories.  She has shared with me several stories of her daughter.  Mostly good.  All the little quirks she had and the funny things she would say or do.  She also talks about the dog she inherited from her daughter.  This lunch lady has seen so much trouble in her life, and yet every time I show up, there she is with a smile on her face and a friendly greeting. 

In the short month or so I have been working with her and getting to know her she has taught me so much.  I also enjoy the fact that she is not judgemental or insensitive to me about any of the limitations I have or special requirements that may be necessary. 

I look at this now as a way God is walking me through this, if not carrying me.  I may not always take notice, but he is sending down subtle signs here, there, and everywhere that, no-matter-what, we are all going to be OK.  That, in its own right, gives me peace and puts a smile on my face.  I feel horrible today, but I feel taken care of and watched over as well.  That makes the pain a little easier to take.

I do have to note my son goes to a Catholic school so every Thursday morning they have mass as well as complete their catechism requirements during school hours.  The other day he came home from school and told me he was so happy to learn that I will not be sick in heaven.  "In heaven, everyone is young and healthy.  At their best." he said with a beaming smile.  To that, all I could respond was "You're absolutely right." with a big return hug and an equally beaming smile. 

Getting Back To Life

Summer is coming and I am enjoying the weather we are having.  I live in southeastern New Mexico near the Pecos River.  As a matter of fact, for the desert, we actually have a lot of water in this part of New Mexico.  I always loved spending my summer days and nights at the river.  I have such fond memories of outdoors in the summer.

The past few years have taken me away from those memories.  I have been going through tests and diagnoses for the past 9 years almost consistently.  Having diabetes slowed me down a lot.  In the beginning, I was an avid runner.  That coupled with the honeymoon phase of diabetes (along with the unknown at the time that I am unable to properly absorb nutrients) lead to a lot of low blood sugars.  I began to avoid activities beyond my daily runs.  Once I was put on an insulin pump, swimming became such a challenge, I avoided it completely.

For those of you who don't know, insulin pumps deliver fast acting insulin.  There is not a maker of water proof (that you can fully submerge) insulin pumps.  This means, when you get into the shower or go swimming, you must detach your pump.  This is ok for a short period of time, but if you plan on being in a pool for longer than 20 minutes you run into the challenge of not receiving insulin.  This will lead to high blood sugar levels within a couple of hours.  Low blood sugars as well as high blood sugars should be avoided.  So what do you do?  Get out every 20 minutes to connect and give yourself tiny doses as the day goes on?  Then you run into the challenge of having your pump/ insulin in high temperatures which can render insulin useless.  My thought, take an ice chest (you'll want food and drinks anyway) and a Ziploc bag and stick your pump in the ice chest while you swim?

I also have a connective tissue disease.  I have trouble with high temperatures.  Temperature extremes hot or cold.  Most people get uncomfortable when they are hot or cold.  Minor adjustments to clothing or activity usually can help.  For myself, it is a complete intolerance.  My body will get very exhausted trying to regulate itself.  In cold, I am in a lot of pain.  In heat I tend to get very bad headaches, rashes, and become very weak.  It seems no matter how much water I drink, it is never enough when I am overheated.  Add to that photosensitivity that comes with connective tissue diseases, and a day at the river sounds out of the question. 

Or so I thought........I have been learning to adjust small things in my life to accommodate my limitations thus allowing me to join the real world a little more often.  Although it is easier and much more comfortable to stay at home where everything I need is at hand, I want to stretch out every now and then.  I would like to come out of my cave in the summer.  With so much at our fingertips these days, like Facebook, I am bombarded with images of people living the life I used to live and I miss it so much.  BUT change is inevitable, even for the healthy, so accept it, grow from it, learn to love it.

Here is my challenge for you.  I am the only person I personally know with these issues.  I have no one to turn to with questions or for advice.  I am determined to take my son to the river this summer.  A full day.  A true southeastern New Mexico, small town fun summer day.  That means hitting the river early, packing plenty of food and drinks, and enjoying every second we can in and out of the water.  I can take an ice chest with almond milk and my protein shake powder (a vegan mix with tons of nutrients), plenty of water, a little fruit, and some nuts for sustained energy and hydration with no fear of contamination or digestive complications.  I can pack all of my pills (every few hours I have some form of medication that is needed for one condition or the other).  I will wear sunscreen and pack extra, along with a hat and sunglasses....possibly even an umbrella.  Maybe a Tupperware-type container rather than a plastic baggie for my pump to go in the ice chest while I jump in the water.  Plenty of bug spray (do all diabetics get eaten up compared to their counterparts? I do).  What else?  Does anyone have suggestions?

I am sure there are insulin pump wearing diabetics who are surfers and river rats.  I am sure there are people with lupus who enjoy outdoor activities despite stamina and weather related frustrations.  These are the two main illnesses holding me back for this particular activity.  I will not just let life pass me by.  I will not watch while everyone enjoys life.  I will find a way to incorporate the things I love into my life, limitations and all.  I will find new passions and hobbies that are more conducive to my current life.  I can, I will.

Will you help me?

Someday you may need help.  I will gladly be that person that holds your hand and walks you through your unknowns; granted I have the experience to offer.  I will happily be the person that helps you go out of your comfort zone in the name of happiness and fulfillment.   

Let's all find a way to quit hiding from our fears and avoiding things we once loved.  Even as a healthy individual, we all lose things as we age that we once enjoyed.  It is not impossible to maintain these things with a few adjustments.

Juggling Act

I guess it's time for another check in.  I would like to write something once a week to keep things predictable, but I have come to learn that is easier said than done.  I did not set out to have a blog with constant updates of tests and procedures along with results, but that seems to be what is consuming my life these days.

Most recently I had follow up appointments with a few of my doctors.  Most important would have to be the gastroenterologist.  As many of my readers know, I have been dealing with numerous digestive issues for several years.  This past year has been by far the most difficult.  I have been on treatment for pernicious anemia, celiac disease, as well as chronic inflammatory bowel disease but I have still been plagued with symptoms.  My doctor decided to order a gastric emptying study.  I assumed this would come back with nothing because the majority of my pain and discomfort are in my lower abdomen.  Out of sheer desperation for relief and lack of motivation to argue, I agreed to the test.

The next day I went to our local hospital, fasting.  I was feed one radio-active scrambled egg.  I was laid on a table, and x-rays were taking every minute for the next 90 minutes to follow the egg through my stomach.  2 weeks later, I am laying in bed with my husband as we are both sick from "the crud" (sinus infection from hell) and my phone rings.  The nurse from my GI tells me the study came back abnormal.  My stomach is functioning at less than 50%.  "That's not good" she says. 

Turns out, I now have been diagnosed with gastroparesis.  Literally, my stomach is paralyzed.  Now, this is a common complication of diabetics, which I am.  The interesting part about it is, I have complained of these symptoms since I was pregnant with my son who is now 6.  I have been told over and over that it sounded like I may have gastroparesis, but that only happens after decades of uncontrolled high blood sugars.  So, not one doctor ever tested for it.  After some research, I learn now that it is also a complication of patients with connective tissue disease, which I also have.  Ggrreeaatt!

I have been on a new medication, Erythromycin, to treat this for about 5 days.  I have to say I am showing signs of improvement.  I will not lie.  I do not enjoy this.  I am not looking forward to my future.  I am 29 years old and, at this point, I am completely overwhelmed with the amount of health issues I have to juggle and balance everyday. 

To add to that, I have had a pain in my outer right thigh for several months.  I have an insulin pump that is constantly attached to my hip so initially I thought I was rubbing my thigh with it every time I would go to the bathroom or change clothes.  I ignored the pain and tried to be more conscious of how rough I was on my body.  The pain never ceased and a lump started to appear.  I had an MRI done.  Thankfully, all that showed was some nerve inflammation.  This is also due to my connective tissue disease.  I will be starting physical therapy for that tomorrow.  Hopefully, relief will come easy with this ailment.

In the meantime, I continue to enjoy the time I have with my family.  My son just finished his spring soccer season.  I must say, seeing six year olds navigate their way through a soccer game is some of the best entertainment.  The pure joy and innocence of the children.  It keeps you grounded and reminds you what life is really about.  I have also come to terms with the idea that being a long distance runner is no longer in the cards for me so I have taken to enjoying long walks with our dogs, Roxy a 2 year old hound dog and Chewy a 9 1/2 year old chiweenie.  Every morning I take them out for an hour or so and we enjoy the spring sunrise.  God is amazing when you take a moment to look around and see all the beauty he has created. 

Connective Tissue Disease/ Lupus "invisible illness"

1. The illness I live with is: Connective Tissue Disease

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: 2005

4. The biggest adjustment I’ve had to make is: weight limitations (loose, painful joints)

5. Most people assume: I'm not sure many people even know about it

6. The hardest part about mornings are: they are slow moving

7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place

9. The hardest part about nights are: complete exhaustion

10. Each day I take 12 pills & 8 vitamins: plus insulin

11. Regarding alternative treatments I: try to educate myself as much as possible

12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses.

13. Regarding working and career: It is not entirely due to the CTD, but I am disabled

14. People would be surprised to know: My symptoms started with rashes

15. The hardest thing to accept about my new reality has been: That it is not going away

16. Something I never thought I could do with my illness that I did was: being able to run again, I had to take a long break

17. The commercials about my illness: rare

18. Something I really miss doing since I was diagnosed is: running as long as I wanted on Sundays

19. It was really hard to have to give up: the strength I thought I had

20. A new hobby I have taken up since my diagnosis is: relaxation- what a thought!

21. If I could have one day of feeling normal again I would: run as far as I could

22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.

23. Want to know a secret? One thing people say that gets under my skin is: not often a topic of conversation 

24. But I love it when people: understand

25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow 

26. When someone is diagnosed I’d like to tell them: I'm sorry.  It will not be this bad all the time.  You are not alone. 

 27. Something that has surprised me about living with an illness is: How different things are day to day

28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.

29. I’m involved with Invisible Illness Week because: Well, it was back in July.  I just found this on a fellow blogger's sight and thought it was cool.  (see sixuntilme.com)

30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!

let's get educated

I woke up this morning, jumped on my computer, and was taken aback by the enormous response I got to starting this blog.  Very exciting.  Changes need to be made, and the only way for that to happen is for people to aware and working together.

I thought I might give y'all some layman's definitions of all the confusing terminology.  Many of these diseases are not well know.  I am not a professional.  I am not a doctor or a scientist.  I just consider myself a professional patient.  I will post links to sites with professional/ scientific definitions. 

I'll start with Hashimoto's.  I was 13 when I got this diagnosis.  At the time, the cartoon Hunchback of Notre Dame was in theatres.  I always thought of the hunchback "Quasimodo" when I heard I had this.  It is an autoimmune disease of the thyroid gland.  Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders.  The soldiers are the antibodies.  Doctors can identify specific antibodies to diagnose different autoimmune diseases.  The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism. 

Next we move on to Type I Diabetes.  Also, an autoimmune disease.  Many people are familiar with diabetes in some sense because Type II is running amok.  These are two very different diseases.  Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin.  Insulin is a hormone that controls blood sugar levels.  Type I diabetics require insulin injections on a daily basis.  I personally use a pump.  It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time.  It is the size of a pager, and it works very similar to a pancreas.  I just manually tell it what to do with buttons.  This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.

The next diagnosis I heard was Interstitial Cystitis.  This is not something I would normally, openly talk about.  When it comes to health issues, however, there should be no shame.  No judge zone.  It is not our fault.  Again, this is an autoimmune disease.  In this case, the lining of your bladder is attacked.  This can reduce or destroy the mucus lining.  The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers.  You could imagine, this is a painful process.  In some cases, nearly debilitating.  This disease actually goes through active times and times of remission.  Thankfully for me, I have been in remission for about 11 months at this point.  Remission can last anywhere from a few days to a few years.  Treatment is usually oral medication.

At this point, you may be thinking "do autoimmune diseases come in clusters?"  Well, some do.  Many patients with autoimmune disease have 2, 3 or 4 different diseases.  To my knowledge, that is the typical max.  In my case, overachiever that I am, I didn't stop at 3.  We fast forward to the diagnosis of epilepsy.  Epilepsy is not an autoimmune disease, however it is chronic.  That means I will have it for the rest of my life.  As are all the autoimmune diseases.  There is no cure.  Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever.  I personally have grand mal, petit mal, and partial complex seizures.  We have not found a cause at this point.

On to another autoimmune disease?  Yes, we are.  Celiac disease happens when antibodies attack the lining of the small intestine  causing damage when patients ingest gluten.  Gluten is a protein found in wheat, rye, and barley.  Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains.  There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease.  Full blown celiac disease can cause severe reactions to the consumption of gluten.  A digestive issue that is certainly not fun!

Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms.  When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease.  It has been classified as undifferentiated, mixed, and full blown lupus.  Depending on the doctor and the test results.  It is considered a rheumatological disease.  That covers many autoimmune disease.  Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested.  It is usually a combination of signs, symptoms, and blood tests that give the diagnosis.  Whatever you call it, a connective tissue disease is just what it sounds like.  Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged.  Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants.  This is where things get complicated.  Steroids can greatly affect blood sugar so they are not recommended for diabetics.  Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them.  It can cause ulcers, stomach bleeding, and even cancer.  Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics.  So I currently take an anti malaria medication.  I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable.  Whew, I'm getting tired just laying this all out.  Hahaha

In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis.  Please read this whole paragraph.  I know what my initial reaction to the explanation was, and it was not pleasant.  Histoplasmosis is a fungus.  Mold and fungus spores fill our breathing air everyday.  We inhale these all the time.  Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them.  Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it.  In a person with a suppressed or compromised immune system it can be much worse.  The fungus gets inhaled into the lungs and begins to grow spores.  Eventually it spreads throughout the body, dissemination.  It is not contagious.  It can cause brain damage, lung problems, spinal problems, skin lesions, etc.  The treatment usually consists of a strong anti fungal taken for about 1 year.  There is a chance of relapse after the year of treatment, but that is rare.

We move on to the final diagnosis of Pernicious Anemia.  This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12.  B12 is important for the central nervous system.  We get b12 from animal products mostly.  With a deficiency, patients feel tired and weak.  They often have nausea and vomiting because the nerves are being damaged in the stomach lining.  With B12 injections, these symptoms usually disappear fairly quickly.  In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.

We are now currently awaiting an evaluation for yet another autoimmune disease.  Appointments are coming in the following weeks so I will fill you in as I get information.

To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son.  He has a difficult time seeing his mother go through so much.  He feels helpless, but just wants to make things better.  He has taken on an very strong interest in super heroes.  To ease his anxiety about his environment he is constantly saving the world!  It is adorable, and he is certainly heroic.  If he believes super heroes can change the world, let's give it a shot.  These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body.  We are out to end their destruction.  Join me in the fight.  Power to the people.  Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life.  That's what makes it all worth while.

Here are some links for real information 

Hashimoto’s Disease  www.edocrine.niddk.nih.gov/pubs/hashimoto-thyroiditis.cfm

Type I Diabetes www.diabetes.org

Interstitial Cystitis  www.ichelp.org

Epilepsy  www.epilepsyfounation.org

Disseminated Histoplasmosis  www.mayoclinic.com/health/histoplasmosis/DS00517

Undifferentiated Connective Tissue Disease  www.hss.edu/conditions_14568.asp

Celiac Disease  www.celiac.org or www.digestive.niddk.nih.gov/ddiseases/pubs/celiac

Pernicious Anemia http://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/

Autoimmune diseases aarda.org